This started as an online journal in early 2006. At the time, it was a carefree spot for silly diatribes and the occasional photo. Since then, I got pregnant with mono.amniotic mono.chorionic twins, learned one of our daughters had a heart defect, spent 11 weeks in a hospital room and 29 more days with Eva in the NICU and PICU before losing her. We have two children who are alive and thriving and one who didn't make it. For me, this has become that place in between.

Monday, December 28, 2009

There is a cute little girl who goes to my daughter's school. She is in the room next door to my daughter. They share the same [relatively uncommon] first name. Prior to starting at this school in September, my daughter and I had last "seen" this child when she was in utero. My then infant daughter and I had gone back to visit the staff at the Antenatal Testing Center where we had had between 35 and 40 ultrasounds -- just me and my girls getting to know each other in this unorthodox way.

This baby and her mother were there waiting for their ultrasound. I knew her mother, who was a neonatologist at that same hospital and we made brief and awkward small talk. This particular neonatologist is really the only one I clearly remember from our harried, desperate days in the NICU. I had met her before I delivered. She was the one who came to my room in the hospital where I spent 80 days to give me a consultation on the risks that 28-weekers face, even though I was already at 30. And she was the one who first uttered the phrase "myocardial thickening" in reference to my daughter, the one I had, until then, believed to be healthy. She was the one who, failing to notice that I hung from sanity's cliff side with only my fingertips, stepped on my hands -- carelessly, not meaning to hurt, but doing so nonetheless. She rattled through our life's circumstances like she was confirming a takeout order. She ticked off all our exotic ingredients like they were common condiments or ho-hum pizza toppings. Our heart defects were mundane, our rare flukes pedestrian.

Okay...Let's see ... that'll be two monochorionic monoamniotic twins, one with hypoplastic left heart syndrome, the other with myocardial thickening. Maybe a couple of VSDs on the side. Do you want to order open heart surgery with that? How about some breathing assistance? Yeah? Would you like that through CPAP or a ventilator?

Okay, I know ... That was really crass and self-indulgent and morbid. The point I am trying to make is that sometimes, just sometimes, your life, your very existence and that of your family feels reduced to a set of labels and discrete transactions. And when that happens, the sum of the parts does not equal the whole. Ironically, I think it was only Eva who managed to transcend the transactional orientation of our hospital experience. They pulled out all the stops for her and she died anyway. I can't help but wonder if anyone comes out without diminishment. This healing place, does it heal without scaring?

So... encountering the doctor brings me back to that desperation. When I see her now (which is a mercifully an infrequent occurrence), it feels as though I am still gripping a cliff side and she still doesn't see where she's walking.

Tuesday, December 22, 2009

Lately every time I see a new pharmaceutical commercial, I lose a moment's sleep or few minutes off my total lifespan. I also sprout some stress-induced acne, but I am quick to just pop those suckas. These ads are alternately hilarious; picture utopic vision with a just a wee smidgen of earthly comeuppance and terrifying (as in, people, the cure is worse than the disease!!). We're so unused to... how you say?... truth in advertising. These things seem not to go together too well.

Witness the Bro.oke Shields informational spot for La.tisse. That is some crazy, crazy. Because no matter how desperate I am for thicker, fuller, longer lashes, I am just not willing to suffer the travesty of redness, itching, weird hair growth wherever La.tisse comes into contact with my face or a permanent change in eye color. Cuz if you're going to head on up to your eyelid anyway, why not just go the extra step and apply the mascara if it is so stinking important? What am I missing here? It's not like the medication has a permanent impact, unless of course, you counting the increased brown pigmentation to your eyes. That is permanent. The eyelash growth, not so much.

So what's with the tirade, you wonder? A few years ago, as D and I were about to get married, I started to feel fatigued and I noticed my pee was the color of iced tea so I went to the doctor. Long story short, I was destroying my liver... with my acne medication. My liver enzymes suggested that I was close to liver failure, but hey, my skin never looked better.

Thursday, December 17, 2009

There was someone in high school with whom I had a close but unequal friendship. I was desperately insecure and she, well, she did not suffer this particular affliction. In one memorable, er.. memory, we went into one of those recording shops in the mall where you could get a tape (yesss, a tape, remember?) of yourself singing along with an instrumental version of a hideous song. She chose "Wind Beneath My Wings" because that, she said, was what I was for her.

Ehem.

So by the time we were seniors, with me enabling her the whole way, she was soaring above whatever I managed to feebly huff and puff below. Finally in the Spring of our senior year and on the heels of college acceptances (which I mention because I think it played a role), I started to come into my own ever so slightly. It's funny what a little acceptance letter from a school you really want to go to can do for the spirit. Suddenly I realized a certainly reality of our friendship and my role in it. And I didn't want it anymore. I didn't need it. I had the envelope. I was leaving and starting a new life in another state and [here's the rub] there was little consequence to my decision. So, I left her pretty unceremoniously. I came to the abrupt conclusion that I did not need that relationship anymore and that she would not change and I was done. I did not attempt to resolve or discuss. I actually remember feeling free.

It was not a shining moment of friendship or emotional maturity on my part. I went from being long-suffering to not being at all. I know that my sudden abandonment hurt her and I regret that. In fact, I know because she told me so at the wedding of a mutual friend a few years ago. It was such a dramatic moment for me that I am convinced I had a dream about it before it happened and I could scarcely sleep the night after. But even then, I didn't fully recognize my own shabby role. My response to her was a non-committal, "it goes both ways."

I hope that by now the universe has offset my bad behavior and that we're better friends to others than we were to each other.

Tuesday, December 08, 2009

I found this [profound, genius; sorry I can't avoid adjectives under the circumstances even though I know good writing need not lean on them] three line poem when I was in high school, before it could really mean anything to me, before I had lost or gained much of anything. I loved this poem then as a series of words that amounted to beauty. Now I love it as the brutal, plain truth. I came across one of the "prayer cards" from Eva's service, on which we'd printed this poem. I hate how those cards turned out. They are so plain, so artless. She deserved better and so did Merwin. But of course, nothing is enough of anything when it comes to her. And she is everything when it comes to me.

Separation

by W. S. Merwin

Your absence has gone through me
Like thread through a needle.
Everything I do is stitched with its color.

Friday, December 04, 2009

This blog has been my private refuge, my dark, safe space for a long time. Although I didn't give much thought to "audience" when I started it well before *everything* happened, I went private (and when I say private, I mean only I could read it) after the collision of fan and feces because, stupidly, I didn't want to burden anyone with my grief and I didn't want to feel obliged to hold anything back. But I have slowly come to realize that as I have come to regularly read other people's blogs (I'm down with OPB...), I have come to form attachments. I have cried and been comforted. I am opening this blog as an act of faith and reciprocity.

In adolescence I always took notice of the appearance of other women and girls. Not consciously, mind you, but perhaps in the second or third row of consciousness I would size females up and categorize them -- fat/thin, pretty/not, etc. I don't think it was all about evaluating them independently, but rather trying to ascertain where I sat in the ever-changing ranked list in my head. I was always seemingly sizing myself up in comparison and I was always finding myself lacking.

Thank goodness I never have to be an adolescent again, cuz that kind of thinking is a travesty of self-respect and (at least as important) a highly inefficient use of finite brain power. Think of what I could have learned if I hadn't wasted so much time worrying about the size my butt compared with the next person's! Misspent youth, indeed.

[whisper] I do it now, though...

I size everyone up, but not according to their physical attributes (at least, not always). I am always calculating the level of pretense I must prop up on my shoulders. How okay does this person expect me to be? How deeply must I bury it? At times it feels (and I've used this metaphor before) like a piece of rotting meat that I have to carry and that I have to hide. The few people and places where the pretense of okayness is abated for a time enable me to just put it down. The relief is real. The change is palpable. Because hiding it is hard. It stinks, after all and so the schemes are often elaborate and the effect... odd and odoriferous. Come to think of it, that's me in a nutshell.

It's as exhausting as always believing that you are the fattest and ugliest (....and most broken....) person in a room and always checking to make sure.